We asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with SMA. Here are their responses:
My sister left me a message in a school assignment
My sister, Martina, also had SMA. Sadly she passed away in January 1997, when I was 6. Martina was just 14. However, Martina guided me more in adulthood than you would think possible. Before she passed away, she wrote a piece of prose for a school assignment. In it, she wrote that she hoped I would know that having SMA didn’t mean it had to stop us from doing what we loved or wanted to do.
The other people who have really helped me are my mum and dad. From giving up work, to building a bespoke house for us and not being afraid to stand up for me when it was needed, they are unstoppable. They have also taught me how to be entrepreneurial about my life with SMA, which I hope I can pass on to others too!
Mom and Dad didn't raise me to be disabled
Mike: I would have to say my parents helped me the most. My Mom and Dad didn’t raise me to be “disabled.” Spinal muscular atrophy didn’t affect me as much when I was younger but I still had some weakness and symptoms. I had the same chores as my brother and sister. They never had a lesser expectation of me. This has stuck with me throughout my life. Remember our disabilities are physical. We can still use our minds. I know the mental stress that comes with dealing with a physical disability can be consuming. Learn to manage it the best you can. Surround yourself with people who care.
My mother taught me to navigate SMA
Samantha: The person who has helped me the most past and present would be my mom. My mom was my greatest advocate throughout my life and continues to be. She is always researching, trying to understand, and coming up with a plan. I like to think some of those skills that I have just listed I definitely learned from watching her trying to navigate things she didn’t understand. Her role in my life has changed from time to time throughout my life. She currently has become my primary caregiver once again in life. I am forever grateful for her support and perseverance. I wish everyone could have someone like her in their corner.
Another Patient Leader showed me I could be independent
Chaz: Most of the time, when I answer this question, I say my mom. She absolutely has been my greatest advocate, but there’s also another person who quietly inspired me many years ago and he’s a spinalmuscularatrophy.net Community Leader, Lewis Beatty. I met Lewis about 10 years ago through one of my professors who’s friends with his family. At the time I was thinking about college and my future career. I’ve always been motivated despite my disability but I still had doubts if any of it was actually possible. Meeting Lewis couldn’t have come at a better time. He was honestly the first person I’d met with SMA that had gone to college, lived away from home, and now had a successful career. I’m sure he doesn’t know this but he really made it clear that my dreams could also be a reality. I hope to inspire someone in the same way.
My parents fought for our rights
Ainaa: Growing up with SMA was never an easy battle. Every day is a constant reminder. I saw my parents sacrifice a lot for me and my late sister. My mom quit her job to give full attention to both of us. When my late sister started kindergarten, our mom applied to be a teacher at the kindergarten center my sister enrolled in. With that, she could look after my sister who also has SMA. While my dad will always be on standby in case anything happens to me during school hours.
Twenty-five years ago, with little information about SMA, my parents took care of us with all their hearts. They never complain about what God has given. They fight for our rights to get an education. Back then it was not easy to find a school that accepted disabled students. Even now, I am still depending on my parents. I will forever be grateful to have such amazing parents.
My brother took life by the horns, despite his SMA
Megan: When I think of someone who has inspired me or helped me navigate life living with SMA I would have to say my younger brother. I know for some that might be odd because he’s younger and in many cases I paced the way for a lot of new experiences since we both lived with SMA. However, when my brother passed away 4 years ago he truly taught me how to live. My brother passed away doing something he loved: skiing in the mountains of Colorado. My brother was fearless and lived life to its fullest. I know we use that term often but he truly was an example of taking life by the horns. That no matter what life presented there’s fun ways to live this amazing life. He inspired me to go after big dreams, not be afraid and to live life the way I want to live it.
My caregiver keeps encouraging me to chase my dreams
Allie: I have had several mentors and cheerleaders throughout my life. My mother was my very first. She has had a huge impact on my life for me to be the independent person I am today. But the one that I think has affected me the most is my best friend/caregiver, Donna. She has encouraged me to chase after my dreams which have included going to school for a music degree, becoming a disability community advocate, applying for the board of directors for nonprofits, and becoming a homeowner. She has always encouraged me to continue to broaden my life, often being a spark of hope in the times I needed one the most. With my mom’s independence and Donna’s inspiration, I think I’ve become a better version of myself than I would be alone.
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